I do, Mr. Chair.
I would like to present the following motion, which was submitted in advance, of course, as per the committee requirements. The motion reads as follows:
That the final framework on Lyme disease not be tabled until the Standing Committee on Health has had the opportunity to review the draft work which should aim to (a) establish proper guidelines regarding the prevention, identification, treatment and management of Lyme disease and the sharing of best practices throughout Canada, and (b) ensure the creation and distribution of standardized educational materials related to Lyme disease for use by any public health care provider within Canada designed to increase national awareness about the disease and enhance its prevention, identification, treatment and management.
I table this motion because a year ago, almost to the day, there was a clear sense of hope in the Lyme disease community. A federally funded Lyme disease conference was held right here in Ottawa in May of 2016. There was a sense that finally experts in the field of Lyme disease would be engaged in the drafting of the federal framework outlined in Bill C-442, MP Elizabeth May's bill.
The Federal Framework on Lyme Disease Act was passed on June 11, 2016. The MPs and senators who passed this bill into law passed it with the understanding that it was to be consultative. But that sense of hope has faded. This federal framework on Lyme disease is being written behind closed doors. It is to be released later this month.
A draft framework was released in February of this year, and the reaction to it was fierce. Dr. Melanie Wills, director of the Canadian Lyme Science Alliance and a professor of molecular and cellular biology at the University of Guelph, said the following:
As a researcher in the field of Lyme disease biology, I am dismayed by the lack of scientific rigor, collaboration, and leadership demonstrated in this document. The Framework does not provide a balanced or holistic portrayal of the biomedical literature, nor does it capture the experiences and needs of Canadians who are suffering from Lyme disease. The CLSA strongly advocates a thorough, inclusive, critical, and transparent evaluation of all available meritorious scientific evidence, as well as meaningful integration of input from diverse stakeholders. We can, and must, do better.
Dr. Liz Zubek, a family physician who specializes in the treatment of Lyme disease, said the following:
This draft Framework tells me to follow outdated guidelines that haven’t been revised in over 10 years. There has been an explosion of research in the past decade and newer guidelines exist that include patient input. This draft Framework also suggests that, as a doctor, I should be satisfied with our inadequate Canadian tests for now, and that maybe in the future we will find improvements. This is, frankly, ridiculous.
I urge the Minister of Health to reject the Draft Framework and insist on a real Canadian action plan for Lyme disease. This needs to be created in partnership with people affected by Lyme and those researchers and doctors who are actively attempting to treat them.
Finally, these are the words of Rossana Magnotta, a director of the Canadian Lyme Disease Foundation:
We call on the Minister of Health to intervene and insist on patient experts being involved in the writing of the framework, even if that means delaying the report to parliament. This is the correct and ethical thing to do.
Mr. Chair and colleagues, 38,000 Canadians have signed a petition clearly denouncing Canada's draft action plan on Lyme disease. The draft proposal ignores science and many major concerns that were raised at the conference. Major concerns include poor diagnosis, treatment plans that fail, human-to-human transmission, and blood bank contamination—yes, blood bank contamination.
You can see that there are some serious concerns by both professionals and patients within the Lyme disease community that this framework may lack some key items. I would like to give the Lyme disease community reassurance that they are included in the drafting of this framework. I am aware, colleagues, that this committee has no more days or time available in the near future to undertake any more studies. I'm aware of that, and I'm also aware that Health Canada intends to release this framework on Lyme disease at the end of the month.
Therefore, this motion I put forward proposes that, through the clerk, of course, we receive a copy of the framework in advance of the final copy being generated so that we can add our constructive input. I'm suggesting that we can review it independently, on our own time, as our meeting schedule is already full.
In the end, it will be we MPs who will have to answer to this framework, and it sure would help if any questions we have could be resolved ahead of the drafting of the framework. I think our input would be most valuable if it is contributed before the document is finalized, because once this framework is written, it's basically written in stone. It would be difficult to change.
Ideally, I would imagine that we could have a draft framework document for about a week to provide our input before it goes to final print, and if this proves to be a successful approach, it may help this committee in future issues.
I conclude with this question: do we all agree that having our input would be a valuable contribution to the process of developing an action plan framework on Lyme disease?
Thank you, Mr. Chair.
